CHfather

Many (but not all) people find that staying on the O2 (often at a lower flow rate) for 5-10 minutes after an attach has been aborted will help reduce the number of subsequent attacks. If you have the M tank that is about 3 feet tall, it has a capacity of 3455 liters. That would mean that theoretically it would last about four hours at 15 liters per minute. Usually there's a point when even if there's still O2 in the tank, it just isn't getting the job done, so figure about 3 hours/M tank at 15 lpm. You should be getting aborts in less than ten minutes. Some research shows that abort times are longer when people are just getting started with O2. Many people like to use just the mouthpiece with the ClusterO2 Kit. A typical breathing strategy is to start with a deep exhale, then a full inhale, brief hold, big full exhale, and so on. Others find other methods that work best for them. The flow rate you use should be such that the bag on your mask is always full when you are ready for your next inhale.

It might be possible that a big medical O2 supply company would be more likely to have big tanks, not just e tanks. I'm pretty sure that Airgas and Lincare serve @Clairmon's part of Virginia with medical O2, and Airgas will also have welding O2.

@Clairmon A prescription should read something like "Oxygen therapy for cluster headache: Up to 25minutes of 15 liters/minute with nonrebreather mask." (A doctor would probably use some abbreviations here.) It is usually then faxed to a company that supplies medical oxygen. You would then call that company and make sure they are bringing you the right stuff (big tanks, regulator, NRB mask). You will probably want to switch out the mask and regulator at some point. Writeup here about welding O2: Notes about welding O2 - ClusterBuster Files - ClusterBusters

The two neurologists we saw in DC both misdiagnosed my daughter's CH, and when it was diagnosed (by us), the second one mistreated it. So no advice, really. People generally recommend that a headache center is going to be your best bet, and I'm sure Georgetown and Johns Hopkins (and maybe GW) have them. There are some things that sound like you might have a hemicrania. Oxygen and triptans not working, for example (though I can't say about actually making things worse), and the constant pain. So it's worth checking out, but typically hemicrania is a CH lookalike, and you don't have typical CH symptoms. Indomethacin is the only diagnostic for hemicrania. If it works, you have it; if it doesn't you don't. BUT be sure you get a proper course of indo -- you seem good at googling (or AI-ing), so look up something like "What is the correct initial dosage of Indomethacin for hemicrania?" ChatGPT gives the answer below, which I think is correct, but I would look around to make sure -- and not trust a neurologist to get it right (even though s/he has a book or an online resource that will tell him/her what's right). "25 mg by mouth three times daily, taken with food. That gives a starting total of 75 mg/day. If symptoms do not improve clearly within a few days (sometimes even within 24–48 hours), the prescribing clinician often increases the dose—commonly to 50 mg three times daily, and sometimes higher (75 mg x 3) for a short diagnostic trial." Busting and hemicrania. From what I have seen here, it typically helps for a day or two or maybe a iittle longer, but then wears off, so people with hemicranias have to do a lot of busting to keep it at bay. But maybe I'm just not remembering other situations in which the results from a more standard protocol were good, as Denny described. That doggone D3 regimen sure seems to help a lot of "headache" conditions. I'd definitely keep doing that.

I have no real thoughts about what you wrote ... just thinking that in case you get in a pinch, the ship's medical staff would probably have some O2, so it might be worth it to investigate/make friends??

Thank you for this post. I think there have been a couple of reports in the past about energy drinks/shots making things worse .... sorry that happened to you.

thank you for posting this.

good for you!!!!!!!!!!! but to the extent you can, keep pushing for a big tank -- an M tank, or an H tank. they ought to have them, and it'll save them a lot of trouble if you have one. aside from e tanks being small, it is not unusual for the effectiveness of O2 to go down when the amount of O2 in the tank reaches some level -- half full; one-third full -- so you can be getting less useful O2 than the tank holds. You're going to be calling them a lot (as i think others have mentioned, the O2 delivery person should be your new best friend, and you might get some extra or bigger tanks from them). i'm not sure what a "travel tank" would be, but anything smaller than an e is hardly worth it. e is plenty portable. with your current mask, block the open holes on the front of the mask with tape, or with your thumb as you inhale, so you're keeping room air out. cut the strap -- you don't want to fall asleep with the mask on your face. press firmly to your face so there are no leaks. normally, the recommendation is to stay on the O2 for some time after the attack has been stopped, so that you might prevent subsequent attacks. five minutes, some say; others say for roughly as long as it took you to stop the attack. many people turn down the regulator as they do this. you should do this, but with an e tank you hate seeing the tank contents go down.

I remember @jon019 saying that his doctor gave him a certificate of medical necessity, or something like that, which helped clear the path with insurance. So the argument here is that contaminants will mess up a welding job and so suppliers are not going to let those tanks have anything but pure O2 in them. The second argument is that people here have been using welding O2 for ten, fifteen years or more without issues. It's not clear to me what the answer was, but if it was just "we don’t supply oxygen to cluster headache patients" and not the insurance thing, it could be that you were reaching someone on the industrial gas (welding) side rather than the medical side. The first time I tried to get welding O2, at a place in Northern Virginia, that's what I was told. So you learn not to ask for it in that way. 15 years ago, we got medical O2 in D.C. from Lincare. No insurance hassles, but it did require some educating about what a person with CH needs. Of course, I don't know what things are like today.

You didn't list the D3 regimen, which has been a great preventive for hundreds, even thousands, of people with CH. Might just be another one you forgot to include, but just in case: D3 regimen - ClusterBuster Files - ClusterBusters Thanks for the heads-up on Brekiya. Interesting!!

It's great that you got that relief, Mike. Do not let it lull you into letting up on getting oxygen! For a lot of people, the effectiveness of energy beverages tends to decline with multiple uses. (Incidentally, the smaller "energy shots," such as 5-Hour Energy, are easier to get down fast and have as much of the CH-fighting ingredients as the larger drinks (more of those ingredients, actually). Also, at least one person here has had success with V-8 energy drinks, which might be a touch healthier.) Many people would be surprised that your triptan pill helps at all (it is reasoned that they take too long to get into the bloodstream). If your attacks are predictable, some people will take the pill before the attack hits. There are a lot of other things I think you might benefit from knowing. The D3 regimen, for exampIe, and busting. I think you might benefit from reading this: Basic non-busting information - ClusterBuster Files - ClusterBusters

Thank you, fingers and toes crossed for you, and please do update.

One thing that many people have noticed is that when the tank gets below a certain level (half-full for some, one-third full for others), O2 loses effectiveness. With a regulator that goes above your usual level, you can increase the lpm to compensate for this. You didn't answer about D3 and busting (perfectly fine), but I'll just repeat that they make a big difference.

@Trent, I remember from some years back that you gave a lot of thought to optimizing your O2 usage, and you were dealing with some Canadian restrictions on equipment. An average attack duration of 44 minutes seems too long, and a total O2 usage of 45 minutes over 16 attacks seems quite low, so I'm curious about what's going on, and of course I am also curious about whether you are doing the D3 regimen or busting, both of which typically reduce attack durations. Since this isn't really the subject of these posts and you aren't asking for any advice, you don't have any obligation at all to answer . . . It just makes me curious about whether there's something that could reduce those longer attacks.

80/day is very unlikely to benefit you, and I wouldn't hope for much from 160/day, either. (240/day is pretty much the most standard starting dose, increased over time as needed.) It seems that immediate release works better than extended release. Also, it takes time for verap to get into your system and help at all. Could be that your doc is starting with extreme caution for some good reason, of course. Often, a course of prednisone is recommended to at least hold off the pain while the verap is settling in. But, really, the D3 regimen is a better preventive for most people than verap, with a lot fewer potential side effects. (see attached) What else are you using for your CH now? You might want to look at this: Basic non-busting information - ClusterBuster Files - ClusterBusters. Also, I have attached an older summary of CH treatment options. It's old enough that it doesn't mention the newer CGRP drugs, but I think what's there is still mostly valid enough as a point of reference. Quick Start Guide - Sept 2023.pdf GoadsbyCluster.pdf